A letter to my boy

I can’t believe that it’s been almost 10 months since you left us. It can feel like it was just yesterday. In some ways I feel like the world has stopped still since you went, and then it feels like so much has happened too. Your little brother has grown up so much and I have started working again…there are some days when your absence is so obvious, so visible and some days not so much, because we still think of you as being here.

We visit your resting place every week. I hope it is peaceful for you there. It is so beautiful. I know I don’t cry when I’m there at your forever bed, sorting out your flowers and tidying up. But I cry every time I walk back to the car. I sing Twinkle Twinkle to myself and have a little cry, walking away from your resting place feels like I’m walking away from you, like I’ve just lost you again. But I love seeing what Harbour View looks like with the change of seasons. Every week we say that we are pleased we chose there for you. I’m looking forward to planting some daffodil bulbs at your spot, so it will look even more beautiful next spring.

We have had to deal with and process immense sadness this year. Sadness that I could never have imagined before. The sense of physical loss has been extraordinary. I’ve felt like a physical piece of me, part of my body, has gone. But I can still feel you in my arms, the softness of your skin. Sometimes I can almost believe that you are still here. Almost.

But we have had lots to smile about this year. Your little brother has been our ray of sunshine. He is such a delight. He makes us smile and laugh every day. We adore him. He has saved us. He will grow up knowing all about his big brother, you are in his heart. In your short life you blessed us with many things, wonderful people we have gotten to know and you showed us just how beautiful life can be. But we believe you gave us your little brother too. You made sure he was here to look after us after you left.

It isn’t just us that have had to cope with your loss, you broke the hearts of so many. And as I always do, I ask you to watch over them and give them strength – you were a strong and brave little boy and there are many people who need some of that strength and bravery now that you are gone.

On a clear night we look up to the stars and think of you. You are all the stars in the sky.

I sometimes feel that I desperately need to know that you are OK, you are at peace. That you know how much we loved you. But I think I know. All you ever knew was love. And you can only be at peace. Your little body can finally be at rest.

You will always be my special boy. My superhero. My superstar. I hope one day that I will be able to hold you in my arms once more. Until then my Samuel Bear, sleep well.

2 thoughts on “A letter to my boy”

I have just read your blog from start to finish. What a journey. Your little Samuel could not have asked for better parents. He was truly blessed. And you too, for experiencing such tremendous love for a beautiful child.

I, too, am a mother of two (now grown) sons – the eldest healthy, gifted and sweet; the youngest handicapped on body and mind and just as sweet as his big brother. My love for them is very different, and I know I did not be there enough for the eldest, which I deeply regret (well knowing that it just had to be that way).

I worry a lot about the future of my youngest (his handicaps are in no way life threatening) – as his dad and I are getting on in age. At 23 he is living in an annex to our house and, very slowly, becoming a bit more independent. Whenever I get bone tired and/or desperate, it is comforting to think about how lucky I am that he (and all his troubles) still are here (I hope you understand, I think you will, as your blog shows so much wisdom and compassion).

The worst grief of all is not being able to give the love you have; all other problems can be solved (or at least lived through). I hope that you can channel some of it to your healthy little boy – and each other; you truly deserve it.

Recent ramblings

WHAT DOES THAT MEAN?

NICU – Neonatal Intensive Care Unit (Sam spent 8 weeks there)
MIDAZOLAM – Samuel’s emergency medicine
JULIA’S HOUSE – Hospice which provides respite and play therapy (and lots of cuddles for Sam)
KETOGENIC DIET – Special diet which can help epilepsy
GASTROSTOMY – This is a button put into the stomach and all feeds and medicines can be given through it
CHLORAL HYDRATE – Medicine Samuel has at bedtime to help him sleep
SATURATION MONITOR (SATS MONITOR) – Used to monitor heart rate and oxygen in the blood
NASOGASTRIC TUBE (NG TUBE) – Tube that goes into the nose and down the throat and feeds and medicines can be given through it